Genetic counselors, patients', and carers' views on an Australian clinical genetics service information system.
Sign Up to like & getrecommendations! Published in 2021 at "Journal of genetic counseling"
DOI: 10.1002/jgc4.1412
Abstract: The Genetic Information System (GIS) is an Australian database of family genetic information. This health information technology system has been used by all 31 publicly operated clinical genetics services across New South Wales (NSW) and… read more here.
Keywords: information; genetic counselors; system; genetics ... See more keywords
Disease progression of alpha-mannosidosis and impact on patients and carers – A UK natural history survey
Sign Up to like & getrecommendations! Published in 2019 at "Molecular Genetics and Metabolism Reports"
DOI: 10.1016/j.ymgmr.2019.100480
Abstract: Introduction Alpha-mannosidosis is an ultra-rare lysosomal storage disorder resulting from the deficient activity of lysosomal alpha-mannosidase. Alpha-mannosidosis presents as a highly heterogenous condition with large variations in symptom severity and disease progression rates. Quantitative and… read more here.
Keywords: alpha mannosidosis; survey; disease progression; mannosidosis ... See more keywords
Adult patient and carer experiences of planning for hospital discharge after a major trauma event: a qualitative systematic review.
Sign Up to like & getrecommendations! Published in 2022 at "Disability and rehabilitation"
DOI: 10.1080/09638288.2022.2133180
Abstract: PURPOSE To identify, evaluate and synthesize qualitative literature on adult patients and carer experiences of planning for discharge from an acute setting after a major trauma event. METHODS The JBI approach to meta-aggregation was followed.… read more here.
Keywords: patient carer; patients carers; major trauma; discharge ... See more keywords
Managing liminality: professional care during organizational change
Sign Up to like & getrecommendations! Published in 2020 at "International Journal of Sociology and Social Policy"
DOI: 10.1108/ijssp-05-2020-0165
Abstract: PurposeThe purpose of this study is to examine the way in which the theoretical construct of liminality contributes to understanding the process of dying of cancer from the perspective of patients, carers and professionals in… read more here.
Keywords: professional care; managing liminality; liminality; liminality professional ... See more keywords
The psychosocial impact of living with mesothelioma: Experiences and needs of patients and their carers regarding supportive care.
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DOI: 10.1111/ecc.13498
Abstract: OBJECTIVE Mesothelioma is a rare cancer with a poor prognosis caused by exposure to asbestos. Psychosocial support and care for mesothelioma patients and their carers is limited and not tailored to their specific needs. The… read more here.
Keywords: mesothelioma; mesothelioma patients; psychosocial support; care ... See more keywords
Patients’ and carers’ views and the importance of ethnicity, diversity and inclusion in research priority settings
Sign Up to like & getrecommendations! Published in 2022 at "Archives of Disease in Childhood"
DOI: 10.1136/archdischild-2021-323725
Abstract: We read with great interest the recent publication of the priorities of child health research across the UK and Ireland. A crucial aspect of any research undertaken is the voice of the patient and their… read more here.
Keywords: methodology; priority; research priority; patients carers ... See more keywords
The agency of patients and carers in medical care and self-care technologies for interacting with doctors
Sign Up to like & getrecommendations! Published in 2019 at "Health Informatics Journal"
DOI: 10.1177/1460458217712054
Abstract: People living with Parkinson’s disease engage in self-care for most of the time but, two or three times a year, they meet with doctors to re-evaluate the condition and adjust treatment. Patients and (informal) carers… read more here.
Keywords: agency patients; care technologies; care; patients carers ... See more keywords
Two faces of the same coin: a qualitative study of patients’ and carers’ coexistence with chronic breathlessness associated with chronic obstructive pulmonary disease (COPD)
Sign Up to like & getrecommendations! Published in 2020 at "BMC Palliative Care"
DOI: 10.1186/s12904-020-00572-7
Abstract: Background Chronic breathlessness is a recognized clinical syndrome that severely impacts patients and carers, who become increasingly restricted in their daily activities. Often, patients become reliant on their carers, who are required to provide constant… read more here.
Keywords: breathlessness; chronic breathlessness; study; patients carers ... See more keywords
How are patients with rare diseases and their carers in the UK impacted by the way care is coordinated? An exploratory qualitative interview study
Sign Up to like & getrecommendations! Published in 2021 at "Orphanet Journal of Rare Diseases"
DOI: 10.1186/s13023-020-01664-6
Abstract: Background Care coordination is considered important for patients with rare conditions, yet research addressing the impact of care coordination is limited. This study aimed to explore how care coordination (or lack of) impacts on patients… read more here.
Keywords: care coordination; study; patients rare; care ... See more keywords
Who should I involve in my research and why? Patients, carers or the public?
Sign Up to like & getrecommendations! Published in 2021 at "Research Involvement and Engagement"
DOI: 10.1186/s40900-021-00282-1
Abstract: Patient and public involvement in research helps to make it more relevant and useful to the end-users. Involvement influences the design, delivery and dissemination of research, ultimately leading to better services, treatments and care. Researchers… read more here.
Keywords: research; knowledge; patient public; carers public ... See more keywords
Exploring patients’ and carers’ views about the clinical use of ketamine to inform policy and practical decisions: mixed-methods study
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DOI: 10.1192/bjo.2019.52
Abstract: Background Only one-third of patients with major depressive disorder achieve remission. One new and promising treatment, ketamine, may prove challenging to implement because of its abuse potential. Although clinicians' views have been sought, we need… read more here.
Keywords: use; ketamine; carers views; policy practical ... See more keywords